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Today is the day my nightmare began

Today is the day my nightmare began. Everything is defined by yesterday and tomorrow. Before and after Devin got sick.

Before today, my life was what I liked to call controlled chaos- four boys in five and a half years. Crazy, active, wild boys, who were busy- skiing/snowboarding, playing indoor soccer, riding down the stairs on a toddler mattress, and running around with underwear on their heads. And, my youngest, Devin, "just" had a concussion from snowboarding. I went on my longest and last marathon training run- sixteen miles. It was normal. Until it wasn't.

By the end of the day, Devin and I were in an ambulance, being rushed to Boston Children's Hospital.

Everything that I knew changed.


My life is defined by today. People often say that things in your life don't define you. But having my sidekick, my baby boy, diagnosed with a terminal brain cancer does. Having to decide whether to answer the simple mom question "How many kids do you have?" with "3 or 4 kids" defines me. My entire life changed with those four awful letters DIPG. I am not the same person, parent, woman that I was, yesterday, three years ago.

But, I can also say that this second half of my book has made me better in some ways. I am stronger, not because I have to be, but because I chose to be. I don't sweat the small things in life, I have a better understanding of what's important and what's not. I know what a difference being kind is, to those we love and those we have never met. How one random act of kindness can carry on through many. I truly know that Devin, and all my boys, are my gifts. I was so lucky to have Devin for almost 7 years. It certainly wasn't long enough but he gave me more in his short time on this earth, than most people get in a lifetime.

To say that I feel lucky is ridiculous. But, my view on life, love, and everything in between is so different. Your life is like a tapestry. All the moments, memories, people, and things that made your life are woven together to make this beautiful piece of art. At the end of your life, the tapestry is completed and left for your world to hold on to and remember you by.

Because my life was completely flipped upside down, I feel like I am able to see the other side of my tapestry of life. I see all the threads and colors being woven together. If one piece of yarn breaks, I can see the other pieces that hold it together, and it keeps being created. It's still beautiful. The way I see and do things is so very different than I ever did before.

It is strange how your mind can almost put up a wall or put life into two buckets, two worlds. I have had many monumental things happen in my life- graduating from college, getting married, having kids, getting divorced, etc. but for whatever reason none of these are as defining as January 24, 2017. My hope is that you can have more than 2 buckets. That there can be other defining moments. Maybe it doesn't always have to be a traumatic wall where life began and the life that you know ended. Maybe life can add another bucket, and instead of a concrete wall , there can be a pretty fence.

I hope so, I would like to have a life that won't always be defined by before and after my youngest son was diagnosed with terminal brain cancer.



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